04 October 2012

Difficulty & Joy

I never do anything to mark October as Down Syndrome Awareness Month - because every day is about awareness and advocacy 'round these parts. But this year I decided to do something on Facebook. And because fb is so fleeting (whatever you post is gone in the blink of an eye), I decided to put a few of the comments here for posterity's sake. I didn't write anything profound by any means, just wanted a place to park them online...

My Post

A quick invite to all my peeps... October is (among many other things) Down Syndrome Awareness Month. I've never really done anything or commemorated it in the past. This year... an invitation... feel free to ask my any question you want. Literally ANYTHING. About raising Sheridan. About Down syndrome. About education. Anything. No question too big or small. There are no asinine questions. So please, feel free to ask or discuss anything at all with me. I'm an open book. I slam shut on October 31st, though ;-)

Some of the Questions and Answers

Q: So how'd you get so lucky to get the cutest guy?

A: I often wonder that myself :) Probably something to do with my super handsome husband. But I'll never admit that to him ;-)

Q: What a cool idea, Lisa! Sheridan looks so, so sweet. I'd actually love to know what you've found to be the hardest aspect of having a child with Downs as well as what is a unique joy you might not have expected.

A: Your questions are awesome, and the hardest to answer without writing a whole damn book ;-) But I'll do my best... THE HARDEST THING: OTHER PEOPLE. Meaning the stereotypes many people in general have about Down syndrome, the education system, the medical community, the people who make decisions about funding education, intervention services, research, etc. It all boils down to the constant advocacy and fighting that is required to get people to see your child as a human being with with value - EQUAL value to any other human being - who deserves respect, kindness, meaningful relationships, dignity, and high expectations, and who does NOT deserve to have any limitations placed on him/her. In the final analysis, that's all any of us want for ourselves, right? And certainly for our children. That's the hardest part... knowing and seeing your child being marginalized (often in very systematic ways) and fighting it with every ounce of your being because it's wrong, because every person has value, and because the human race simply needs to get over itself with its perceptions of normalcy and who is "worthy." THE UNIQUE JOY: THE PEOPLE I HAVE MET ON MY JOURNEY. I have gained more dear friends - people I truly love - in the last 4 years than I had my entire life before Sheridan was born. Some of these friends I met through blogging. Some of them I met here locally - started with meeting three other moms at a park who had infants with Ds, and they became true sisters to me - now we have over 100 moms in our "support network" (I don't even know all of them anymore we've grown so large so quickly!) - but the group of sisters I know and love best, and the other dear friends I've met along the way, were the most surprising and unique thing about having a child with Ds. Oh, the other unique joy: watching my son teach me more about life in his four years than I've learned in my entire lifetime.

Q: How can we help others learn the importance of People First Language?

A: The best way I've found to help others learn the importance of People First Language is to simple model it. Most people grow up hearing "Down syndrome child" or "Downs kids" - that's generally how people refer to anybody (bald guy, Black guy, autistic girl, etc). As you know, people don't mean anything marginalizing by saying "Down syndrome boy" or "she is Downs" and so they don't know how people in the Ds community feel about it (heck, most media stories involving somebody with Ds use that language, or even worse, "she suffers from Down syndrome" - UGH). So, I just model People First Language with the goal that eventually people will pick it up 

Q: As a preschool teacher I often have children in my class who have not yet been diagnosed with any special needs but through my assessments and observations Iwe do find some special needs in my children such as autism, hearing loss, etc. As a parent with a child who has special needs what do you suggest as the best way to talk to parents about these needs and be the best advocate I can be for these children? It can be such a difficult conversation to have and I always want to respect the parents but still advocate for the child.

A: The first thing I have to say to you is, you are AWESOME and so amazing for even thinking so carefully about both the children and how to advocate and help them (and their parents!). That's half the battle. Second, I imagine you have frequent opportunities to meet with and give updates to parents. I think your genuine concern for the children will be a great service to you in this process. The parents will see and know that this is coming from a caring place of concern, a place of wanting to help. It's no secret that as parents we don't like to hear anything negative about our children (and sometimes parents get defensive, angry, confused, etc). You need them to HEAR you and take action. To that end, starting with the child's strength will help them listen (Bobby Sue is doing great at X and Y. She's really focused on learning Q. She's a great listener and follows directions. We have noticed that at times she has a hard time hearing us, though. Has she had her hearing checked lately? It might be something as simple as some fluid in her ear, but I'm concerned that she often doesn't hear what's being said, or doesn't hear it clearly. Have you noticed the same thing at home?) That's a much simpler example than a child who has sensory needs, cognitive delays, etc. But I think that even for those parents who have a hard time with whatever you share about the child, being specific will help, and trying to talk about what you are seeing in the classroom and what they are seeing at home will help open the dialogue. And you KNOW these kids. The parents will recognize that. Last thing, (I don't think you would do this, but just adding for good measure :) don't just leave parents with a bunch of problems and concerns like dropping a bomb on them and then telling them to have a nice day and walk away. Make sure you give the parents specific, actionable next steps. If it's just doing a follow up with a doc, make that clear. If it involves assessments, etc. give them the name and contact information of a person/agency they should contact and give them some guidance about what to ask for. The hardest thing for parents that I've seen (especially those I know who had concerns about a potential autism diagnosis) is that their world shatters, the floor is ripped out from underneath them (not always, but it's devastating for many to just have the "concern" put out there that your child might have some life-long challenges), and they have feel lost, confused, scared, angry, etc. and they don't know what the next steps are (or are scared to take them). If you can be a friendly, gentle guide for that first step, that alone is an amazing service you can do.

Q: Where do you see putting Sheridan for kindergarten? Does Sheridan like dinosaurs? Is Sheridan going to try team sports next year? Does Sheridan have any health concerns that prevent him from doing anything whatsoever?

A: 1. For kindergarten we have a few options. Technically, his kindergarten year will be next year in his currentMontessori school (the Primary Class is 3 years, ages 3-6, and children stay for all three years - so traditional preschool through kindergarten all in the same room together. The real choice comes with the following year. Do we want to have him do another year in the Primary Class, do we want to transition him to another (public) school to either K or 1st grade, or do we want to transition him to Lower Elementary in his current Montessori school (lower elementary classes are also 3 years, grades 1-3 all together). If we transition him to a public school when he is 6, we won't put him in kindergarten (he's already mastered most of the traditional K curriculum and he'd be bored, I think). That's the only thing I know for certain. We have another year to 18-months to see where he is and try to figure out what our other options are. 2. Sheridan loves 2 songs a bout dinosaurs, but isn't into them in general. He's never really been exposed to them much beyond the music, really. 3. For sports, Sheridan currently does horseback riding with my amazing cousin Amber, we plan to start him in ballet soon, and I would love for him to do one team sport. LIkely soccer. Maybe tee ball when he's a bit older (my dad will love being involved in that, too). Hoping he eventually does swimming, too. Want to expose him to lots of sports and let him find 1 or 2 things that he likes and gravitates toward. Oh, also will start piano lessons in about a year :) 4. Sheridan has NO health concerns; HOWEVER, all children with Down syndrome have the potential for atlanto-axial instability (instability in the cervical spine), so we avoid any activity that would put pressure on it (like summersaults). Other than that, he's free and clear to do anything he wants.

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